Having an exchange blood transfusion Information for parents or carers of a child with sickle cell disease

Transcription

1 Having an exchange blood transfusion Information for parents or carers of a child with sickle cell disease

2 This information sheet has been given to you to help answer some of the questions you may have about your child having an exchange blood transfusion as a treatment for sickle cell disease. If you have any questions or concerns, please do not hesitate to speak with the sickle cell doctors, sickle cell specialist nurses, day unit nurses or the child and adolescent mental health services (CAMHS) practitioner. What is blood? Blood is the red liquid in the vessels of the body. It is made up of different types of blood cells and plasma (a straw-coloured liquid that carries the blood cells around your body). The different types of blood cells are: red cells, which contain haemoglobin (the red pigment that carries oxygen to and carbon dioxide from the tissues of the body) white cells, which fight infection platelets, which are clotting cells. Normally red cells last about 120 days in the blood (although they last for a shorter time in people with sickle cell disease). They are then removed by the body, which means that the body always needs to replace them. 2

3 What is a blood transfusion? A blood transfusion is a procedure that puts red cells into the body. This could be a planned procedure, or be performed in an emergency situation. The two main types of blood transfusions are: A simple transfusion (top-up) A few units (bags) of blood are given through a small tube (drip), usually placed in a vein in the arm. For more information, please speak to the day unit nurses or ask for a copy of the leaflet, Having a simple (top-up) blood transfusion and the National Blood Service leaflet. An exchange blood transfusion This is a procedure that replaces sickle blood with non-sickle blood (from a donor who does not have sickle cell disease). Why would my child need an exchange blood transfusion? This procedure might be needed in an emergency, such as for: a complicated sickle cell crisis, such as a stroke a chest crisis sickling in the lungs causing breathing problems a very painful crisis. A routine or planned exchange transfusion may also be done in the following situations: 3

4 If your child has had a stroke, long-term repeated exchange transfusions every 3-6 weeks as a part of the transfusion programme can help reduce the risk of further strokes happening. If your child has had abnormal Transcranial Doppler scan results, long-term repeated exchange transfusions every 3-6 weeks as a part of the transfusion can help reduce the risk of them having strokes. If your child s sickle cell disease is very severe, repeated exchange transfusions (every 3-6 weeks as part of the long-term transfusion programme) can help reduce the number of crises. If your child is going to have a major operation, a single exchange transfusion reduces the risk of complications from the general anaesthetic and surgery. If your child has leg ulcers, exchange transfusions may aid healing. An exchange transfusion may help in cases of severe priapism (painful erections) that have not responded to other forms of treatment or surgery. Asking for your consent We want to involve you in all the decisions about your child s care and treatment. It is entirely your choice whether your child has the transfusion programme (transfusions every 3-6 weeks) or not. We will give you relevant information to help you come to a decision with the sickle cell team. It is important that you understand 4

5 the information and have the time to ask questions and to make your decision. If you agree to the transfusion for your child, you will be asked to sign a consent form. This confirms that you agree for your child to have the treatment and understand what it involves. If you would like more information about our consent process, please speak to a member of staff caring for your child. Is it safe to have a blood transfusion? In the United Kingdom, we take many precautions to make sure any blood given is as safe as possible. You can find out more from the National Blood Service leaflet Will I need a blood transfusion? The main risk from a transfusion is that the wrong blood could be given by accident. To make that the right blood is given, the clinical staff must make careful identification checks. They will ask you to state your child s full name and date of birth and will check the details on your name band, to make sure they receive the correct blood. They will also regularly monitor your child during the transfusion (check their blood pressure, temperature, pulse and breathing rate) and ask your child how they are feeling. The risk of contracting a disease, such as hepatitis or human immunodeficiency virus (HIV), is extremely low: 5

6 The risk of getting hepatitis B is less than 1 in 1.3 million (someone would be more likely to die in a gas fire, explosion or from carbon monoxide poisoning) and 1 in 28 million for hepatitis C. The chance of HIV infection from a blood transfusion is 1 in 6.5 million. The possibility of a blood transfusion transmitting variant Creutzfeldt-Jakob disease (vcjd a rare, incurable brain disease) is extremely small and a number of precautions are taken to reduce this risk. We now strongly advise that all patients on a transfusion programme are routinely vaccinated against hepatitis B. During the transfusion programme, your child s immunity to hepatitis B and other viral infections will be regularly reviewed. Although the risk of contracting an infection from blood is very low, we recommend that we check your child for HIV and hepatitis C infection once a year. What are the possible complications of blood transfusions? Minor reactions Your child may get a skin rash or a minor fever, for example. These can be treated easily with paracetamol and antihistamines. 6

7 Iron overload This is common in people who receive repeated blood transfusions. When necessary, excess iron can be removed by taking medication (injections or tablets). This is much less likely when the exchange machine is used than when an exchange transfusion is performed manually. Antibodies Your child s blood is matched very closely with the blood of the donor (the person who donated the blood). However, it is possible to develop antibodies against the donor blood, so you need to make the clinical staff aware of any symptoms your child may be having after the transfusion (see the section on delayed transfusion reactions). These antibodies can mean that matched blood is harder to find and can take longer to prepare. If your child has developed antibodies you will be sent an alert card that says I need special blood. This is to help ensure that anyone treating your child knows that their blood needs to be matched against them. Please ensure you show this to clinical staff before your child receives a transfusion and in any hospital where you are treated. Delayed transfusion reactions Occasionally a patient experiences a delayed transfusion reaction (where the body abnormally breaks down the blood that has been transfused), which may occur within the first two weeks of being transfused. 7

8 This may cause: severe generalised sickle cell pain/crisis blood in the urine (red or cola colour ) feeling tired feeling short of breath fever localised loin / back pain. If your child experiences these symptoms you must take them to hospital immediately for assessment and you must inform medical staff that they have been transfused recently. Possible complications specific to exchange transfusions Your child may experience light-headedness and fainting. Your child may experience a tingling sensation on their lips and fingers. This is due to the anticoagulant used, which lowers calcium levels in the blood. We may give your child a bolus of fluid after the exchange to correct this. Some patients feel tired for a day or two after the transfusion. 8

9 Is any preparation needed before the transfusion? Your child will need to have a blood test before the transfusion. Once the transfusion date is agreed, your child will be given an appointment card from the day unit with the dates for their blood test (this is normally a day before the transfusion date). If they require special blood ( because of antibodies) it is essential that you bring them for blood tests a few days in advance, or blood may not be available from the transfusion service and their transfusion may be cancelled or delayed. You can bring your child to the phlebotomy unit for their blood test on the date given on the appointment card, between 9am and 5pm. Your child needs to be accompanied by an adult for all tests. If your child is unable to make their appointment, please call the day unit or clinical nurse specialist as soon as possible. Why does my child need a blood test? A blood sample is taken so that we know your child s blood group, and whether they have developed any antibodies. Each time your child have a transfusion, the laboratory will test their blood against the donated blood, so they are transfused with blood that closely matches their own. 9

10 It is important that your child attends this appointment, so we have time to order the blood that the need. Where does the transfusion take place? The transfusion takes place on Husky Day Unit on the 1st floor of the Evelina Children s Hospital at St Thomas Hospital, unless you are told otherwise. Please arrive before 9am if your child has been offered a morning session for the exchange transfusion. However, if your child has been scheduled for afternoon session you must arrive on the unit by 12.30pm. Does my child need to bring anything with them? Your child might want to bring a book, laptop, personal stereo or a handheld computer game with them to keep them occupied, as they will need to keep still during the procedure. They should bring their regular daytime medication, including painkillers, as we may not have them on the day unit. They should wear something comfortable. What happens on Husky day unit? Exchange transfusions are given through the portacath (a type of central line). The portacath is situated under the skin and uses a large vein in the chest. Cream is normally applied to the port site before accessing to 10

11 numb the area. The exchange transfusion is either done manually or with a machine. The specialist nurse will access your child s port and attach the line to the blood exchange machine. The bag of blood that has your child s details (name, date of birth and hospital number) will be checked carefully and the exchange will begin. The nurses will continually monitor your child. During the exchange you and your child can expect the following: The nurse will check your child s blood pressure, pulse, temperature, and oxygen level regularly. Your child can sit up or lie down. If they need to go to the bathroom we can disconnect them for a short while. Your child will be able to read and write and also eat and drink if they wish. Will my child feel anything during the exchange transfusion? Sometimes people feel a tingling sensation around their mouth during the exchange. This is caused by a drop in their calcium level (explained on page 8). Your child should inform the nurses if they experience this. 11

12 How long will the exchange transfusion take? The exchange blood transfusion process takes about four hours. This will also depend on your child s clinical history and how much blood is used during the procedure. What happens after the transfusion? When the exchange is finished, a blood test is taken so we can see how much of the sickle haemoglobin is left in your child s blood. Finally, your child will be assessed by a nurse and, if everything is fine, you will be able to take them home. We will give you the date for your child s next exchange transfusion before you leave. After the exchange, we recommend you take your child home and that they rest for the evening. Why does my child need repeat exchanges? Normal red blood cells only last 120 days in the body. Repeat exchanges are needed to keep the sickle cells in your child s blood to a low level. The frequency of the exchanges depends on the reason for exchange. 12

13 What happens if I want to cancel my child s exchange transfusion or change the date of their procedure? You must contact the sickle cell nurses or Husky Day Unit as soon as possible so that they can arrange an alternative date. Does it always work? Most patients selected for a long-term transfusion programme have severe sickle cell disease. The exchange transfusion tries to reduce the number of sickle cells in the blood as much as possible, but it can t make them disappear. It also can t suddenly make some of the complications of sickle cell disease disappear like an old stroke, bone damage or visual loss associated with sickle cell disease. This means that sometimes problems can happen to people even though they are on an exchange transfusion programme. Your child will still have an increased risk of infection. It is not a perfect treatment, but it does reduce the chances of new serious problems happening. 13

14 Meet our team Dr Baba Inusa (lead consultant for children with haemoglobin disorders) t: (secretary Mary Abiri) e: Natalee Murray (sickle cell nurse specialist) t: or e: Sharon Ndoro (senior research nurse coordinator) t: or e: Luhanga Musumadi (adolescents nurse practitioner) t: or e: Jo Levitt (therapy and psychology team) t: Kemi Ajamufua (specialist nurse community) t: e: 14

15 Notes 15

16 Contact us Evelina London Medicines Helpline If you have any questions or concerns about your child s medicines, please speak to the staff caring for them or contact our helpline. t: am to 5pm, Monday to Friday e: letstalkmedicines@gstt.nhs.uk Patient Advice and Liaison Service (PALS) To make comments or raise concerns about the Trust s services, please contact PALS. Ask a member of staff to direct you to the PALS office or: t: at St Thomas t: at Guy s e: pals@gstt.nhs.uk Language Support Services If you need an interpreter or information about your care in a different language or format, please get in touch using the following contact details. t: fax: NHS Choices Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health. w: Leaflet number: 4116/VER1 Date published: June 2015 Review date: June Guy s and St Thomas NHS Foundation Trust 16